Thursday, December 31. 2015

Sitting here on the cusp of a new year, there is too much in my heart for me to keep it there, and so I turn here, just like always, to let it overflow even though it’s been nothing but echoes and cobwebs in this place for far too long.

A year. A whole year, the first time we’ve turned over every single page on the calendar with him by our sides, and it feels monumental and important and terrifying all at once. I look back over these last nearly four hundred days, exactly two thirds of his life, and, as per usual, it looks nothing like what I expected. Somehow we’ve spent only two of them in a hospital bed, visited the ER only a few times (with a few fingers and all my toes left over if I lose count), and it just doesn’t make sense that this boy with everything wrong inside should be doing so well on the outside.

It’s a different kind of hard, having a healthy sick kid.

Don’t get me wrong. This is nothing like the hard that so many of our friends have experienced this year. It’s not the crushing, exhausting hard of sitting in a hospital, waiting for someone else‘s tragedy to offer your child hope. Not the searing, agonizing hard of walking out of that room with empty arms and an empty heart. Please hear me. I am in no way trying to compare these apples to those oranges.

But maybe this is what makes it so impossible, the apples and the oranges and never knowing which it’s going to be when you take a bite. Every time I reach for the next size of pajamas or pull things in next year’s size out of a bag of handmedowns, there’s a voice that reminds me that, despite the fact that he's almost breaking off the top of the growth charts for height and learning new words faster than I can keep track of them, this is a boy without a guarantee. I go to reorganize the closet in my front hall, and even though I haven’t touched it since April, I can’t bring myself to put my hospital ‘go bag’ anywhere else. Just in case.

And that’s why this sweetness is always laced with bitter. Knowing that, on paper, with his heart all hollowed out and his organs scattered like buckshot, my son really shouldn’t be able to be who he is in all his bright-eyed, wild-dancing glory, means that I have spent this year with one eye open, never letting myself fully relax, because for a child with half a heart, what if is always going to mean something more like when.

This is the narrow beam on which I balance, none too gracefully if I’m honest. We have been given the indescribably precious gift of time, and it’s somehow been so much more than just time marked by hands revolving on a clock face. This boy has taken my ordinary life and spun it through with something that feels like magic. I'm breathless with the beauty I can suddenly see in every last mundane, magnificent moment, and I know I just need to be grateful, but I still can't stop asking why. Why me? Why us? Why have the monsters stayed quietly in our closets and under our beds when so many other heterotaxy families are fighting tooth and nail every day to keep them at bay?

Every perfect day with my son is a day where I am achingly aware that I was not promised any of this. Every shining moment when I think my heart is going to burst, whether from watching his sister sing to him across a sunlit room or handing him to his daddy to settle in for a nap or snuggling with him in our nest of blankets before the sun comes up, every one of these is a moment that makes it harder to believe that this perfect ordinary is tenuous and breakable and so very, very fragile.

I don’t really know what I’m trying to say. Maybe it’s that I need you to understand how scared I am, even if it seems like I don’t have any reason to be. Maybe I need to give a voice to these fears that, even when things are going so right, I am somehow getting it wrong. It’s so hard to look like everyone else from the outside but to know that, at our core, we have been changed irrevocably by this boy of ours.

We don’t love the same way any more. We can’t. This is a new love, one shot through with grief and fear, reinforced with the deep, quiet realization that a life without guarantees is maybe the best kind of life after all.

So here’s to the new year. Here's to admitting that I don't really know how to mother a medically complex child who also happens to be inexplicably healthy. Here's to many more shining moments in the face of the looming darkness, to bigger shoes and life lived with wild abandon in the face of everything that could go wrong. Here's to apples and oranges and praying with everything in me that I'll have the courage to hold them both if that's what these next months have in store.

So beautifully written, as always, and heart-wrenchingly honest. You may not realize how much your son has changed the lives of people who have never met him, or you, as well. I remember your fear and pain before his birth and I thank God for every one of Ethan's miraculous days. Every single time I see a photo of his adorable face, I am reminded of His greatness and His generosity and His plan that we won't ever understand. I don't know if I've ever seen anything that shows those things as purely as the gift of Ethan does.

I do underestand Ali. My son carries a medical condition that comes with it the threat of 'any time' -- and maybe it will never never happen. Maybe we'll carry that emergency injection for decades and never need it. Maybe he'll continue to fall ill with this shattering regularity yet never fall down that dark hole of medical crisis and sudden death and yet .... We carry the maybe/anytime with us everywhere and it is a strange sort of tension ... I don't write about this aspect very often myself because it is so hard to articulate ....

So, I just wanted to say, I hear you, and I understand. Life has so many unexpected blessings and miracles and you just never know what the next bend in the road will reveal to us .... The important thing to is to love one another and praise God always. Always. And trust that He has it well in hand ... This story is agreat unknown for us, but He knows, and that is a great comfort to me. {{hugs}}

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welcome!

I'm Ali, wife to Phil and mama to Zoe and Ethan. We spent the past 6 years living and working with Mercy Ships on board the world's largest non-governmental hospital ship, the M/V Africa Mercy, as nurse, electrician, and ship's baby respectively. On board the ship, we worked with a team of volunteers from over thirty different countries, providing free surgical care and healthcare development, bringing hope and healing to the forgotten poor in West and Central Africa.

In March of 2014, during a routine ultrasound, we found out that our son, Ethan, has a four-in-a-million condition known as heterotaxy. He has major congenital heart defects, and had his first open heart surgery before he was a week old. Although the future for our son and our family is uncertain, we are more than ever convinced that God will be faithful to lead and guide us through this new season the same way He has in the past.(I've had a big problem with spam comments around here and literally don't have the time to sort through all of them, so comments on all entries before Ethan's story began have been turned off to keep the numbers down. I moderate all comments on new entries, so don't worry if yours doesn't show up right away. If it won't let you post, please e-mail me at alirae[at]quist[dot]ca. I love hearing from you!)

ali (that's me!)

phil

zoe rae

ethan vikash

ethan's story

Due on the Fourth of July and born on Canada Day, Ethan has given us so much to celebrate. He had his first surgery when he was six days old and amazed the doctors by being ready to go home before he reached the two week mark. Heterotaxy can affect every organ system, but so far Ethan seems to have escaped some of the common complications. While his heart has a number of complex defects, it's working well so far. His intestines actually formed correctly, and his lungs and kidneys are all functioning well. He does have at least five spleens, and it's assumed that they do not function, so his immune system is most likely compromised; he will most likely be taking daily antibiotics for his whole life.

Here are a few links that might be helpful, since the medical side of things can get pretty confusing with a heart this special. The surgeries listed for each of his heart conditions don't necessarily apply in our case, since we have to look at the big picture, not just each individual defect; we're still waiting to see how his heart grows before we decide what the next step, which will probably taking place between 3-6 months, will be.